Patient Perspectives: finding answers, support & medical care

The long term effects of COVID sucks so much. And, like, it's just absolutely miserable.

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You've all been through this now, particularly with many of you getting sick early on, when we didn't know, necessarily, what to do with the acute portion of the pandemic.

Now, as we move forward, this whole idea of having, you know, post-COVID syndrome or being a long-hauler is evolving.

How have you dealt with these issues with health care? Where do you go for your information? A lot of my information, I go to, you know, the source.

I'm looking at the actual research articles. I don't just rely on American news sources.

I look to see what's going on in the rest of the world as well, with their local news sources.

I know I found a lot of my resources through the support groups and just connecting with each other. But I primarily find my resources outside of the US.

The UK really seems to have a good grasp on it. And they have some pretty good guidelines for employers, patients, doctors.

Body Politic, they're one of, like, the international support group that has, like, support groups in the US, Europe, Japan, and so on.

That has been a lifeline for me. They have research studies but they also have a really strong support group that--

I don't know where I'd be without it. I'm just still really hoping that, as we continue the study and we continue to do, you know,

groups like this where we actually have doctors who are interested in talking to post-COVID patients, that there will actually be some solutions that will come up

in terms of, OK, here are the things that are actually causing all these symptoms. Let's treat the cause and not just put a Band-Aid

on the symptoms. I just wanted to say, that's all coming. Like, that's normal because we were the first wave,

and nobody has seen this type of COVID before. So we're Guinea pigs.

So it's to be expected that they don't have one pill for us. But there's clinical trials underway.

And, you know, we just have to be patient and give it time. COVID has been so variable. And just hearing your four stories here,

you know, what may be driving disease in one person may be different in the next person. And that's the part that's hard. So someone who has a predominance of chest pain,

shortness of breath, and decreased exercise tolerance, the next person might have brain fog and a lot of lethargy and depression.

And it's all post-COVID, but it's such different presenting symptoms. And I think, in the medical community, that's what we struggle.